OpenHealth Q&A

Seeking Answers: Unexplained Symptoms That May Indicate Acromegaly

I am a 40-year-old woman, standing at 5 feet 9 inches and weighing 140 pounds. My medical background includes a range of concerning issues such as persistent pain on the right side of my abdomen, an emergency gallbladder surgery in 2024, hypothyroidism, cognitive difficulties, fatigue, post-traumatic stress disorder, fibromyalgia, and a tubular colon polyp identified in 2025. I reside in the Pacific Northwest. At this point, I’m feeling very overwhelmed and would greatly appreciate any insights regarding my health condition. Initially, I suspected acromegaly, but I'm open to exploring various possibilities. **QUESTIONS ABOUT MY NON-CONTRAST MRI:** I have several questions regarding the findings in my non-contrast MRI, and I hope to gain some clarity: * 1. What are the irregularities observed in my skull? * 2. What does the white area signify? * 3. Can someone explain the ribbon-like structure seen in the imaging? **MEDICAL HISTORY** Last year, I underwent an emergency gallbladder removal after years of discomfort, which my primary care doctors failed to diagnose. The surgeon discovered significant scarring and inflammation in my gallbladder. * The sharp, burning pain in my right abdomen persists; it sometimes cramps, radiates heat, and even causes me to sweat profusely. * I also experience significant cognitive challenges—despite sleeping 10 to 14 hours a day, I often feel fatigued and have trouble organizing thoughts, spelling, and finding words. I occasionally have episodes resembling mania. * Since September 2024, noticeable growth has been occurring on my forehead and at the back corners of my skull. I am plagued by intense head pains and sensations of burning and pressure that do not resemble traditional headaches. * Tingling has been a constant issue in my foot, fingers, and shoulder for more than a year; my left foot appears to have grown half an inch longer than my right foot, causing discomfort with shoes, and my hats now fit tightly. * I experience frequent unexplained bruising, particularly in the same areas on my shins. * My mouth is persistently dry, and despite using Biotene, drinking water, and consuming Gatorade, none of these remedies help. During a visit to the emergency room in September 2024, a non-contrast MRI was performed, but the results were inconclusive, leading the staff to dismiss my concerns and send me home. Since then, I have consulted various specialists including gastroenterologists, neurologists, and neuropsychologists, but none have provided a diagnosis or effective treatment plan. While I recognize it may seem paranoid, I cannot shake the feeling that they viewed me as a difficult patient or that they suspected something I wasn’t aware of. I switched to a different healthcare system but have still yet to find answers. I believe I could have acromegaly, but my doctors have been dismissive—likely due to my physical appearance not being overtly indicative of the condition and possibly influenced by my mental health concerns. My skin is fair, and my forehead growth is not easily visible. While my growth hormone levels were slightly elevated initially, the negative result of my Glucose Growth Hormone Suppression Test led the endocrinologist to rule out acromegaly without further testing or referrals. They even misrepresented some symptoms in my patient records. Upon conducting my own research, I discovered several errors in how the lab handled my test, as well as updated guidelines suggesting that it’s still possible to have acromegaly despite negative results on the OGTT. When I respectfully requested a contrast MRI and corrections to my medical summary, the response I received was curt and dismissive. Although I filed a grievance with patient services, they informed me that the review and necessary adjustments could take more than a week. I have sought second opinions from other healthcare systems nearby. Unfortunately, one only accepts internal referrals, which are difficult to schedule, and the other was unwilling to consider me based on the inaccuracies contained in the initial doctor's summary. At this moment, I am feeling lost, confused, and desperate, battling significant pain and struggling to find validation and understanding. Any suggestions or information would be immensely helpful as I navigate this challenging situation.

Answers (1)

6/29/2025, 11:21:17 PM

OpenHealth AI

I'm truly sorry to hear about the overwhelming challenges you're facing with your health. Managing multiple symptoms and seeking a definitive diagnosis can be exhausting and frustrating. Let's break down your concerns regarding acromegaly and your MRI findings, while also considering your overall well-being.

Main Points:

1. Potential Acromegaly Symptoms: Your reported symptoms, including growth changes, cognitive difficulties, persistent pain, and fatigue, may raise valid concerns about acromegaly, but a thorough evaluation is essential.
2. MRI Concerns: The irregularities in your MRI findings warrant clarification, as they may hold important insights into your health.
3. Next Steps: Focus on symptom documentation and pursuing further investigation, including potential referrals for specialty care or improved diagnostic imaging.

Explanation:

Acromegaly is a condition characterized by excess growth hormone, often caused by a benign tumor on the pituitary gland. Symptoms can include changes in physical appearance, joint pain, headaches, and other systemic effects. Given your reported symptoms—such as the growth on your forehead, cognitive issues, and persistent abdominal pain—it's understandable that you're concerned this may relate to acromegaly or another hormone-related condition.

Regarding your MRI findings:

• Irregularities in your skull could indicate bony changes or other abnormalities that require further investigation by a specialist, such as a neurologist or endocrinologist.
• White areas on MRI often indicate different types of tissue changes; clarification from a radiologist would provide a better understanding.
• Ribbon-like structures could represent normal anatomical features or potential abnormalities; again, a detailed discussion with a specialist would be beneficial.

Next Steps:

1. Document Your Symptoms: Keep a detailed diary of your symptoms, including the onset, duration, and any patterns you notice. Note changes in your physical appearance, cognitive function, and emotional health.
2. Request MRI Interpretation: Ask for a detailed report of your MRI findings from your radiologist. Understanding what the radiologist observed can help guide further testing or referrals.
3. Pursue a Second Opinion: Since transitioning to a new healthcare provider, continue seeking second opinions, especially from endocrinologists who specialize in pituitary disorders. Bring your symptom diary along to articulate your concerns clearly.
4. Explore Hormonal Testing: Discuss with your new healthcare team the possibility of comprehensive hormonal testing, including IGF-1 levels, to assess for acromegaly potential, even if previous tests were inconclusive.
5. Inquire About Educational Resources: Seek out resources from support groups or organizations like the Acromegaly Community, which may provide additional insights and avenues for advocacy in your healthcare journey.

Support:

It's completely normal to feel lost and overwhelmed, especially when dealing with complex and unresolved health issues. Remember to engage in self-care practices that can support your mental and emotional well-being. This may include mindfulness activities, light exercise, or engaging in hobbies you enjoy. You're not alone in this, and continuing to advocate for yourself is crucial. If you ever feel overwhelmed, consider reaching out to a mental health professional to help manage these feelings.

Please let me know if you have further queries or if there are specific aspects of your situation you would like to discuss more.